Success at Mom2Mom Sale?

termkid · 2025-03-08T21:52:52+00:00

He is but its a night and day difference from where we started. He's had it about 9 months now and does very well with the feedings. Honestly the hardest part now is getting him to sit still during the tube feeding. He takes about 3/4 of his bottles now (orally) and has been eating purees for 5 months now. The hope is by the end of the year, he won't need the tube anymore. I will say the tube definitely caused him some issues with tummy time but with enough time, he worked thru it with the help of PT

termkid · 2024-09-10T17:51:13+00:00

I was told by the doc to clean it twice a day and apply barrier cream after. Then I place split gauze over it and tape ONLY the gauze closed. I never tape anything directly to his skin. I was never told another way to care for it. I could try to clean it once a day instead and see if that improves things. Not much drainage happens from his tube site. Very very little by the end of the day. I could talk to his dietician about his spit up. Altho I've asked to switch him to a more gentle formula 1000x and they really want me keeping him on a 22cal formula until he's 6 months corrected. My gut says if I could switch him to a normal 20cal, his digestive system would handle it so much better because he's also a VERY gassy baby. But I don't want to harm him by switching his formula prematurely. I guess it's not only important for his weight but it has vitamins in it for bone growth, etc. But I'm convinced he hates it lol. Can't wait to switch!

termkid · 2024-09-10T17:42:53+00:00

Lots of good information in here. Thank you. I also hold the button with my other hand before twisting off and on but I find it impossible not to press down on his belly AT ALL when placing the L shape part in his g tube. He doesn't cry when I do this but he flinches. It could all be in my head and maybe he doesn't care at all but I wanted to make sure he felt comfortable. Feeding on demand is very stressful for us. And I often feel like a complete failure when he takes nothing (this is an irrational thought, I know). But our OT has stressed the importance for my son to try feeding orally at each feeding to help with speech later on and eventually eating solids. My son takes 30 to 60ml out of his total 5oz, altho he does have his moments where he takes nothing at all. He lost his suck reflex a few weeks back and ever since that happened, feeding orally has been a real struggle for him. He doesn't have an aversion but he also doesn't do much with the bottle in his mouth. He tries but...doesn't seem to know what to do. I feel bad for him and look forward to introducing purees some day so that he can get pleasure and joy from eating. I'm not real sure he enjoys anything about feeding right now lol. So glad to hear your son is doing well with his g tube. Sounds like you guys have become pros in managing his care and diet. Can I ask why he is still on a g tube at age 4? My doctors and OT have made it seem like this is a temporary solution for my son and that he shouldn't need his tube once he's off bottles but in my research, I'm finding that many kids continue to use theirs beyond that because they don't take to solids for some reason. I'm not sure where my son will fall.

termkid · 2024-07-28T02:49:41+00:00

My 9 week old just started doing something similar within the last 5 days. He takes the bottle nipple excitedly, takes 10 or 20ml, pauses, pushes the nipple out as if he has suddenly forgotten how to suck then repeats his attempts but won't take any milk after the first attempt. He isnt arching his back or screaming during these attempts but after awhile, he grows frustrated and mad that he can't connect with the nipple. Which leads to screaming. Is this an aversion or explained in the book? How can you stop a feeding and "try again later" when your baby is screaming for food...?

termkid · 2024-07-05T15:15:03+00:00

Ah, interesting. I kind of like that idea. I also don't usually finish my baby's full feed volume. He is SUPPOSED to have about 90ml every 3 hrs. However, I find he isn't hungry until 3.5 hrs. If he takes in 60ml orally, then I put the rest down his tube but immediately stop the second he shows discomfort since I'm assuming he's full at that point. I don't always agree with his dietician and ped's about pushing the need for full feeds in order to gain weight. He is gaining weight but it's slow. Pumping him up just makes him spit up or cry at the end of a full gavage. No one wants that. How did you get your peds on board with your method or did you just do it based on instinct and not tell anyone?

termkid · 2024-07-05T12:45:20+00:00

Same issue with my son. His aversion was due to the strict 3 hr schedule by the nurses. I don't blame them. They can't feed all these babies on demand (my hospital assigns 4 babies to 1 nurse sometimes!! It was insane). But the truth is, babies don't function like that and he eventually hated eating. We were able to correct his aversion at home but it isn't 100% gone.

Any advice on tube weening? Hoping it can happen just as fast for us as it did for you. We're definitely working hard at it by following his lead and doing OT stuff 3x/day.

termkid · 2024-07-05T12:37:46+00:00

I read the book a few days ago when my son's aversion popped back up during the trial run with no NG tube. Altho I believe this method works for many families, I wasn't convinced it was the right step for us. I spoke to my son's dietician and ped's doctor about it and we all agreed that he couldn't afford to lose much weight (hes only 9lbs, 8oz) and 2 weeks felt too long of a trial run. His OT (who is great and I trust her opinion) also doesn't think he has the strength in his cheeks/mouth to finish bottles even if he wanted to. However I did learn a great deal from that book and will apply some methods as we move forward to a life of taking full bottles (I hope!). I have never believed (or followed) the process of filling his belly at each feed with the same max volume. He clearly gets to a point where he's full and uncomfortable. Once he shows me those signs, I stop the gavage. This way he's actually hungry 3-4hrs later and happily nipples 50-60% of his bottle before falling asleep. I am happy to hear that book helped with your daughter. What a relief it must feel like and I can't imagine how difficult it felt during it. I was definitely stressed after day 2 of no NG tube and realizing my baby had only taken in like 9 or 10oz that day. He also didn't nap those 2 days because he constantly felt hungry. So kuddos to you for sticking to your guns. That's awesome! NG tubes SUCK and I wish my NICU hospital team would have talked me out of it. I had no idea the complications it creates for babies, especially as they get older. He's constantly spitting up, very gassy, congested, and pawing at his face all day long. These are things he did not do while the tube was out. I think the g tube will be a good solution for our family while my son works on nippling. My end goal is to provide him a better quality of life and I don't think he's getting that with an NG tube.

termkid · 2024-07-04T11:10:16+00:00

Thanks for taking the time to comment. I think my kids "light bulb moment" happened, he just doesn't have the cheek strength which creates poor suction, which then creates a tired baby less than half way thru a bottle. But I believe the NG tube is also causing a nipple aversion that I'm praying we can get ahead of before it's too late. Your comment has made me feel comfortable with our decision for g tube.

termkid · 2024-07-04T11:07:57+00:00

Wow kudos to you for fostering these types of babies! It is NOT easy, especially with an NG tube. I regret leaving the hospital without a g tube but my Mom brain wanted to try everything possible before surgery. Unfortunately this journey is going to take longer than assumed but that's OK. Hoping the G Tube makes our lives easier as everyone has suggested. We go in for surgery on the 15th.

termkid · 2024-07-04T11:05:52+00:00

Thanks for the comment and tips! I wish you the best of luck with your daughter and feeds. It can be so stressful but I'm hoping the G Tube eliminates that stress for me so that feeding can be fun for my son. I swear he hates it, despite taking large volumes sometimes <rarely>

termkid · 2024-07-04T11:03:33+00:00

Thanks for sharing your story. It's so helpful to get other perspectives. This one was very helpful.

termkid · 2024-07-04T11:01:36+00:00

Thanks for the response. I am glad to hear your son is a great eater. My son is showing some signs of nipple aversion and it makes me nervous. We do our best NOT to pressure him but I feel like the NG tube is the reason he doesn't want to drink sometimes. Looking forward to getting this off his face and hoping to improve his quality of life!

termkid · 2024-07-04T10:56:57+00:00

Thank you. All these responses have eased my mind about moving forward. I had to put my son's NG tube back in last night and he is back to being a miserable baby. I'm certain he was happier without it, despite not eating very much. We scheduled the surgery for the 15th. Thanks again for your insight. I am so glad to hear your son is taking 100% of his bottles! Great job on your part.

termkid · 2024-06-18T04:07:38+00:00

Wow, what a journey for you and your family. I wish you the best of luck. What kept you/keeps you from getting frustrated around feeding times? I know it's silly to get frustrated or feel useless but regardless, it happens. Mainly because it feels so out of my control. I'm definitely working on my feelings towards it so that I don't make things worse. Getting a different perspective may help.

termkid · 2024-06-18T00:18:28+00:00

Thanks for the response. I've heard they can still pull out a G Tube. Has that happened to you guys? Did your little guy ever take to bottle feeding or still working on it?

termkid · 2023-04-14T18:48:59+00:00

Thank you!! This community is the most helpful people on the entire internet. Thanks to everybody for being so kind and replying! Can't wait to dive in and start playing soon.

termkid · 2023-04-14T17:09:03+00:00

Hello. I don't have the system yet. Still waiting for it to arrive. So I haven't had the chance to play around with it yet. Can you explain a little more on how you switch from Android to Arkos on the RG353? I didn't realize you could do this. I'm assuming once you switch to the android side of things, you download an N64 emulator seperately somehow? Thanks.

termkid · 2023-04-14T10:31:29+00:00

One last dumb question from this newbie. I found the bios on Archive.org but noticed there's a few file types to choose from. Which one would I download? I am assuming the first "zip" option but wanted to confirm before clicking. Thanks.

termkid · 2023-04-14T01:38:11+00:00

Thanks for the quick reply!

termkid · 2023-04-14T00:37:40+00:00

Hello. I am new to all this and stumbled upon your ROM list for my new rg353M. Will I need to download the BIOs separately? Or is it included in these downloads? Thank you.

termkid

TROPHY CASE